diagnosed 05/08

LynnT
LynnT Member Posts: 3 ✭
edited August 2020 in Newly diagnosed
Actually not sure of diagnostic date - that was when I was told after being recalled for a repeat mammogram which showed indications of BC, followed by ultrasound, palpation by a ?surgeon, who told me that it "doesn't look good" then a needle biopsy (on the 29th July) ... the path results say that I have invasive carcinoma of no special type, and focal high grade DCIS ..... the grade is 2-3.  I have an appointment with the surgical team next Thurs at 1000 and since I live about 3 hours drive away it means that I really should leave about 0630 which is dark, cold and foggy :) good fun! Anyway that is where I am 'at' at the moment ... scared but aware that it could be worse .... and living day to day as I do anyway ... my main concern is for my dog .... if I have to have radiation therapy (they already said I would) it may be between 2-6 weeks so it will be hospital accommodation for me, and boarding for her as I live alone and there is no one local who can take her in for that period of time. I have bought a dog ramp as I have to pick her up to put her in the back seat of my 4wd - she is a standard poodle but on the small side - only 22kgs, thankfully. It will be fun teaching her to use the ramp in the next 2 weeks or so. I am unsure when I will have surgery as they will tell me on the 13th .... so plenty of time I guess. 

Does anyone have experience with telehealth - I wanted them to just tell me the diagnosis via skype, facetime or phone but they said BCNA "prefers" f2f, they wanted me to drive 3 hours (6 return) for a 5min interview where they told me the diagnosis (surgeon only comes for an hour on Wed and there were 6 biopsy reports to be made)  so an appt was made with a gp for me so she could tell me and she had no idea ... thought we were teleconferencing and kept me waiting outside whilst she waited for them to call etc ... anyway, I need to find someone who is knowledgeable about women's health issues. 

sort of rambling - apologies ... waiting is annoying :)
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Comments

  • Raich
    Raich Member Posts: 114 ✭
    Hi LynnT. I’m new to this too. Waiting is the worst. It definitely sounds like you need to find a doctor who is more considerate of your needs. Is there a McGrath Breastcare Centre where you are? I’ve been contacted by mine already and they are a fantastic source of support. They might have some alternative solutions to your current teleconferencing problems. 
    I’m sure there will be more beautiful women on this site who will be able to give you advice, I’ve only been on here a couple of days and lots of lovely people have reached out to me already. 
    Lots of love to you xxx
  • ddon
    ddon Member Posts: 349 ✭
    Welcome LynnT. So sorry to see you here - we all arrived here with great reluctance but find great support and encouragement to get through. The waiting sucks and it’s so hard when you have distance to deal with - you say you live alone(plus furry friend) I hope you have support? Many ladies on here will give helpful advice - I just wanted to send a hug and tell you that on the whole it gets easier to deal with as time goes on and you get through the yuk waiting at the start. Xx
  • Cath62
    Cath62 Member Posts: 1,459 ✭
    HI @LynnT,  

    My diagnosis was 30 April, grade 3 invasive BC. I cried for 2 weeks  then had surgery  2 wks later and started chemo 3 wks after that.

     It is so hard this waiting and wondering what's ahead. It is such a ride and emotionally hard to keep up with everything as it all moves along so fast.

    Everyone's cancer is different and ok the higher grade sounds scary but much can we done and treatmentwill be availablefor you. We are all here to support you and it is great you are here.

    I hope telehealth can be sorted when you need it. I have only had telehealth with my GP but I am in Brisbane. 

    The pathology will determine your treatment.  Itvis very complicated and individual treatment follows that. My cancer was Her2 neg but positive for oestrogen and progesterone. My treatment involved surgery, chemo (currently in progress for 13 rounds), then I have radium daily for 6.5 wks and then hormone therapy.  All up about 6 months of chemo and radium. Hormones for yrs to come.

    Try to keep busy and distracted as much as you can till your surgery. I found surgery a relief from the stress of it all. I didn't read google but stayed with the information with BCNA. I found meditation and walking helpful to relieve my stress.

    You may need some help at home after surgery. I couldn't lift anything. What support do you have to help you. You may need a special friend who can be there to help you. I didn't tell many people. I choose only those who i thought would support me. A couple of those haven't turned out well and I had to leave them behind so they aren't part of my treatment etc. 

    Stay in touch with us all here and let us know how your appointment goes if you would like to. We are here for you. 

    Sending big hugs xxxx
  • Locksley
    Locksley Member Posts: 974 ✭
    Hi LynnT sorry to see you here.   This forum has some wonderful people with lots of advice to share.  Sending you hugs xxx
  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    Hi @LynnT These are difficult times for everyone, but the challenges of a new diagnosis coupled with distance issues are something else altogether. 
    If you don't want to drive 3 hours for a five minute gig, now is a good time to stick to your guns. The rules have changed, so if you feel you have the mental stamina, please push for a more reasonable solution. Do you have a breast care nurse who could sit with you for a phone consult? That someone else would 'prefer' things are done as they always have been doesn't quite cut it now. Gps can be a godsend, but they are also the most time poor of all our health team and, for some reason, don't always get the professional respect from specialists that they deserve. They cant wait around for a call that doesn't come. Ask whom else may be suitable.
    Don't get too concerned about managing after surgery. Many of us have handled being on our own and if the washing doesn't get done, the dog doesn't get walked and the floors aren't mopped for a couple of weeks the world won't stop. You may well find you cope much better than you expected to. Good luck . Mxx

  • Ahnn
    Ahnn Member Posts: 42 ✭
    Best wishes for all your appointments @LynnT. It sounds like you may spend more time in the car travelling than in medical appointments. Is it possible to stay with friends closer? As others have said you may wish to take a friend or support person with you to appointments as there is a lot of waiting and a lot of information to take in. Once dates are set for start of treatment you will find time goes much faster. Big hugs
  • LynnT
    LynnT Member Posts: 3 ✭
    thank you all for your comments, yes I was assertive with the 5 min appt and said that I wouldn't be attending, they arranged for a local GP to tell me. I live in a very small town outside of Casterton, we have about 140 residents and Casterton has about 1500, I have lived here 6 1/2 years. I have access to a Breast Care NP in Hamilton which is about 60kms away and we have spoken on the phone, I attended Ballarat Hosp yesterday, left about 0515 but went to the wrong place lol oh well, I am geographically challenged as I keep telling people who dont really believe or understand. Nevertheless I was only 5 mins late for 1000 appt but didnt see the specialist till about 1140 - I was so cranky I almost walked out, I could have left home later & not been so anxious about leaving on time etc ... anyway I stayed, somewhat reluctantly. The specialist is nice but I was so tired, I agreed to participate in some research involving a magsteel insert (to locate the cancer for the surgeon) & magdye (?) - special dye injected by the surgeon and over the next couple of weeks it will make its way to the sentinel nodes which are affected (maybe) by the cancer. This entailed more procedures, the dye was just injected but the magsteel insert had to be guided in place using ultrasound, then a mammogram to ensure its position, then I attended admissions.
    So operation is scheduled for the 01/09/20 and I have to be there at 0700. I am going to call and ask about that ... plus I have to isolate for 2 weeks prior and get a covid 19 test one week prior to the op. A long day as I arrived home about 1830 ... was so grateful and happy to be home. I am thinking though that after this post I should be checking out the other forums - cheers and good luck to all.
     
  • Abbydog
    Abbydog Member Posts: 510 ✭
    Dear LynnT,
    I'm wondering how you are doing? Hope you are going well.
    The distances you need to travel surely make things difficult for you.
    Did you find other forums? Do you recommend any?

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